Am i under medicated? new symptoms.: I have been... - Thyroid UK

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Am i under medicated? new symptoms.

henrythewasp profile image
28 Replies

I have been on here a few times asking for advice as i am feeling under medicated and my last Serum TSH level reads Above range 9.0 miu/L(0.3-5.0) with a note saying Suggests under-replaced with thyroxine-Outside reference range.I had a letter sent to me just after from the surgery saying The result of your recent TFT blood test suggests that you continue on your current dose of Levothyroxine (50 mcg) and we will repeat the blood test in 3 months.Now is it me but Under replaced with thyroxine-Outside reference range says to me i am UNDER MEDICATED.I am finding i am starting to have the same symptoms again that i had when i was first diagnosed with Hypothyroidism....Tired in the day,i dont wake feeling refreshed after a nites sleep,pains in one foot when i put weight on it,back pain,and a feeling of something in my throat.I am due to see my doctor again on wednesday 28 August,any advice please.

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henrythewasp
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28 Replies
PinkNinja profile image
PinkNinja

You are correct. Please argue this with your doctor. 9 is outside the range. Although some doctors won't treat until you are above this level, once you are treated your TSH should be within range at a level that removes your symptoms.

I hope you get your increase

Carolyn x

helvella profile image
helvellaAdministrator

That letter beggars belief!

Only having read so many similar things in the past stops me jumping up and down.

If the almighty TSH is going to be used to control dosage, then flaming well use it! Don't allow it to reach the stratosphere before adjusting a dose. Suggest you go with your calmest head on and try to get firstly an increase (I suspect you really need quite a bit more - but 75 mcg for six weeks might be acceptable, then review), and, failing that, a proper explanation of why they think they are doing the right thing. Obviously I don't think they can provide the second option...

Rod

henrythewasp profile image
henrythewasp in reply tohelvella

Cheers Rod,i kid you not,it had me questioning my own intelligence.

henrythewasp profile image
henrythewasp

Thank you Carolyn,i have had this argument with the reception staff but they say i am reading it wrong.I have told them i have read it from left to right,right to left,top to bottom etc and it still reads the same to me lol.

editfmrt profile image
editfmrt in reply tohenrythewasp

This makes me really angry. What the hell is happening when you even have to enter into arguments with receptionists. It just beggars belief that they are making you wait when you are clearly under medicated. For goodness sake you have symptoms which need to be resolved and the blood tests show that clearly. How dare they keep you ill. Their lack of knowledge and skills isn't even an excuse - they have the instructions from the lab for goodness sake.

helvella profile image
helvellaAdministrator in reply toeditfmrt

Henry - if you have any problems with your surgery, take editfmrt with you ! :-)

editfmrt profile image
editfmrt in reply tohelvella

This really made me laugh Helvella - as you will have gathered this made me really cross and I would willingly have words given half a chance!! That said, always very polite but with firm insistence and no ranting is the only way though. Really hope Henry can get through to them though.

henrythewasp profile image
henrythewasp in reply toeditfmrt

I will let you know how i get on.I have decided not to wait until wednesday but will try the lottery approach they have by phoning at 8am and asking if they can get me in in the morning (Tuesday) i was actually lucky to get the appointment of Wednesday in advance.

editfmrt profile image
editfmrt in reply tohenrythewasp

Good

Luck and hope it goes well.

henrythewasp profile image
henrythewasp in reply toeditfmrt

Well it worked,i managed to get in and i have just got back.The doc said that yes i am under treated but they want to keep it that way to see if my levels change! i said i am starting to get symptoms again and have been reading understanding Thyroid disorders by Dr Toft the doctor started to get a little agitated and said look! I have decided to do it this way because its what works,it took years for you to get ill so it could take years for you to feel better, it needs to be done slowly but i will increase it if you want but i don't recomend it!.I have gone for the 25mcg increase so its taken my Thyroxine now to 75 mcg and i have to go back 3 month from now for another blood test as you would expect.

PinkNinja profile image
PinkNinja in reply tohenrythewasp

Wow! Your doctor seems a little hard of thinking. Does he think your thyroid will suddenly go "oh, I've had a good rest. I think I'll buck up my ideas and start working again"? I would have been asking for references to research showing that his approach works best :D

Glad you got your increase though. Shame you have to wait another 3 months!

You might want to show him this paper next time that clearly shows you are at increased risk of heart problems and such while your TSH is above range... Ask for his references first though, just for fun :D I bet he doesn't have any.

endocrinology.org/press/pre...

I hope you start feeling the benefits of your increase very soon.

Carolyn x

henrythewasp profile image
henrythewasp in reply toPinkNinja

Thank you CarolynB and to everyone else here helping me.

editfmrt profile image
editfmrt in reply tohenrythewasp

Hmmm - agree with what CarolynB has said although he is right in some respects that it takes a long time to get ill and that it takes time to get better. Also if you have been hypo for a long time, if the increase is too rapid then you can get symptoms of hyper until the body adjusts to the new feeling of the higher levels. How long have you been on 50mcg?

All that said, making you wait another three months on a dose that is known to be inadequate, when you are feeling worse and clearly shows in your test results is a little harsh.

He should be testing every six weeks and adjusting accordingly. Three months is far too long between tests in the early days of treament. Once you are stablised on levels which make you feel well, the frequency can be reduced. If I was a cynic I would wonder about cost cutting now they have to manage their funds themselves!!

Nevertheless, if you do experience hyper symptoms from the 25mcg increase you can always change to increase by 25mcg every other day for a couple of weeks until you adjust ot the new feeling - so 75mcg one day and 50mcg the next. Everyone has different levels of sensativity to the medication and only you will know how it is affecting you.

I don't think you can expect the tiredness to dissapper overnight though.

Good on you for sticking to your guns. Did you have the guts to ask him for your history of test results?

tegz profile image
tegz in reply toeditfmrt

I reckon Docs are touchy, as we can't prove whats bothering us and get left to struggle with it - but they can be accused of wrong treatment all to readily, when results don't happen right. Thyroids don't fit into the 'easy meds for all' category, so prevalent now.

editfmrt profile image
editfmrt in reply totegz

Yes agree - it's a shame some of them resort to scare tactics though.

henrythewasp profile image
henrythewasp in reply toeditfmrt

Oh yes i got all the history,i have put all this in a section somewhere bellow this asking about this.

henrythewasp profile image
henrythewasp

Do the numbers in the brackets suggest what the readings should be between? if not then where should my TSH be?

helvella profile image
helvellaAdministrator in reply tohenrythewasp

The numbers in the brackets are what is often called the reference range (sometimes "normal" range).

In broad terms, yes, your TSH results should be within that range. However many argue (with justification) that the range is too broad, that when on treatment the target should perhaps be lower rather higher within range or, sometimes, below range, and that TSH does not always reflect thyroid hormone levels properly!

For starters, assume you should be well in range - not on the top end or higher.

Rod

editfmrt profile image
editfmrt

Henry - just a thought. You have your latest blood test results but do you have any earlier ones, especially the first ones that confirmed the diagnosis? If you can get these it will show how your levels have changed since beginning medication.

It is really useful to build up a picture of how your treatment is progressing and a history of results measured against your dose of levo will help with this - but always taking into account how you are feeling and what symptoms you have.

As you increase your medication it will help you to learn which dose is best for you. Everyone is different though and blood tests are only a guide despite what the doctors say.

henrythewasp profile image
henrythewasp in reply toeditfmrt

Hi editfmrt.Yes i asked at reception for a print off of ALL my results,boy you would think i was asking for an increase in medication lol what a stern and frosty response i got.....My original level of Serum TSH i was diagnosed with on 16 of May was 43 mui/L (0.3-5.0) and by August the 6th it was at 9.0.Looking at that big change can this extra 25 mcg make a dangerous change taking into account how much of a drop has happend?

editfmrt profile image
editfmrt in reply tohenrythewasp

Ha ha - I have seen that look many a time. It really sends them into a spin when you confidently, firmly and politely say you want your results.

I'm not medically qualified so can only relate to my personal experience which we share to help others make their own decisions but it seems to me the drop in your TSH level is going in the right direction but not optimal as you have already quoted to the doctor from Dr Toft.

Perhaps your TSH level has risen again since the 6th August giving rise to your worsening symptoms. 50mcg is too low as a final maintneance dose.

It's difficult to say at this stage but the general rule is that the dose should be gradually increased approximately every six weeks until you reach the optimal level (for you and with resolution of symptoms) with tests taken beforehand to confirm. Other reasons for taking this more slowly are in the elderly or where there are known other health conditions e.g. heart disease. In these cases a more gradual approach is recommended.

I hope your GP has tested you for more than just TSH levels? If so it would be good to post all the other results so others can help you with these. TSH and FT4 should be done when optimising thyroxine therapy in newly diagnosed patients with hypothyroidism. Ideally he should have tested for thyroid anti bodies to determine if the cause of your hypothyroidism is autoimmune i.e. Hashimoto's and the thyroid hormone levels FT4 and FT3. Sadly, many GPs are ignorant or even worse choose to be selective about what they are prepared to test because of cost - or both. More recently labs are choosing not to test for FT3 either if the TSH is in range but those with good knowledge of thyroid conditions will know that TSH alone does not give the whole picture.

As I said in my previous reply, if you do notice symptoms of hyperactivity with the 25mcg increase then you can reduce it to every other day. When the symptoms settle put it back to 75mcg per day until you have your next test.

He sounds like he could be a tricky customer so you may have to handle with diplomacy to get him on side. The bad ones don't like to be challenged or questioned. It dents their ego and makes them feel threatened. The good ones are happy with informed patients and want to work in partnership - hopefuly that will be your experience.

Have you found the main Thyroid UK website which gives you mounds of good information?

thyroiduk.org.uk/tuk/about_...

Redz profile image
Redz

Hi Henrythewasp, I note with interest your symptoms and can relate to most of them , especially the ' pain in one foot ' is this a symptom of hypothyroid or have you noticed it getting worse since treatment started . I ask because I have had a problem with my right foot , severe pain when i put weight on it .. The doctors said it was due to something else but I'm beginning to wonder as it hasn't responded to the treatment they suggested . I have Autoimmune hypothyroidism also on 50 levothyroxine . Thanks .

tegz profile image
tegz in reply toRedz

Plantar fascitis- I've had it- it's quite specific and unrelated to strain/overuse with me.

thyroid.about.com/b/2004/10...

Check comment (15)

henrythewasp profile image
henrythewasp in reply totegz

I have mine in the arch of my foot,sometimes i hardly notice it but as the day goes on it can get worse esp if i sit down or give it a rest and then stand up again,i have been a little more active recently than i normally would be ie walking and exercise bike. Some years ago i had an Achilles tendon operation after severing it.Also on the other foot i have what looks like dermatitis or something i told the doc about this today but the doc said i will need to make another appointment as time was running out.Thankfully i have my original appointment tomorrow that i was going to cancel on the way out and it will be a different doc so just let them say i am under medicated!

Redz profile image
Redz in reply totegz

Thanks tegz, interesting !

in reply totegz

Plantar fascitis seems quite a common complaint for us Thyroid sufferers, when will they realise that some things are not confined to one body part! Who on earth chopped the body up for each doctor to specialise in? it all works together for goodness sake! J x

henrythewasp profile image
henrythewasp in reply to

Well as predicted i saw a different doctor today about the pain in my foot.I told him i as Hypothyroid and he looked at my notes and said yes you have just had an increase in Levothyroxine and Thyroid sufferers tend to get a lot of aches and pains more than anyone.I was crafty and said i can't remember how i was told to take my 25mcg increase on top of my 50,was i told to alternate it? The doctor replied to take with the 50 to make a daily increase totaling 75mcg per day.I said why did i have that increase? reply was because the last TSH result showed i needed the increase and he told me to come back for a check in 2 months,the last doc said 3! oh.......My foot problem is down to the amount of exercise i have been doing lately and i have a large arch that isn't supported so i need to get some arch supports.

5219 profile image
5219 in reply to

I have the same problem and Drs say it’s not connected but it’s funny that most people with a thyroid condition have it

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